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Found 12 results

  1. Hello, My name is Mary. I am new around these parts. My husband of 3 years was diagnosed with stage 4 lung cancer on July 8th, 2021. As my journey into caregiving as started I’m seeking information on how to support, help, and provide the best care I can for my husband. Maybe in part always seeking help myself to deal with all the craziness this brings to one’s life. Our life will never be the same (as with any other chronic illness or cancer). Cancer took our dreams of having a family, a sense of normalcy, feelings of security, and many other things. But what cancer can’t take is our strength, fighting spirit, hope, and most of all our faith in God.Thank you for reading.
  2. In my time as a caregiver for my parents, there is one theme that haunts every interaction and every decision: the status of the relationship between the folks having the conversation. (Well, duh, Danielle, because that theme determines most things in life, doesn’t it?) (Sure, Inner Monologue, you are correct, but I’m the one writing this, so shush!) Where was I? Oh, right. Relationships. I know there are stacks and stacks of scholarly works written on the complex navigation of relationships in a caregiving framework, and I am not qualified to weigh in on that ongoing discourse. I also don’t mean to make you, my friend, sift through a tome. I am, however, qualified to opine on my own experience, and to put these thoughts out into the universe with the sincere hope that they can somehow be helpful to someone else who comes along and is going through a similar hardship. So, here are my “Top Five Relationship Observations” involving caregivers, caregiving, and the related (pun intended!) situations we might find ourselves in. 1. “Let” your loved one be the person she/he is. I don’t like the word “let,” because adults should not hold reins on other adults, but for that exact reason, “let” fits here. In our rush to make sure our person is cared for and content, we can often get quite pushy. I am extremely guilty of this. I have to stop myself on a daily basis from “parenting” my parents. Granted, I am not currently a caregiver of people with mental incapacities, so my tasks are limited to physical and household assistance, meaning my “parenting” of my parents should be extremely limited. The primary goal in everything we do as caregivers should be the preservation of the inherent dignity of our person. I need that tattooed on the inside of my eyelids. We have the best of intentions: we always think we are working toward that goal when we schedule the doctor appointments and make the phone calls and order the lunch and pay the bills, but consider: are we putting things on our plates that our person would rather keep on their own plates? Are we infringing on their independence, vitality, or sense of identity? Am I assuming a responsibility unnecessarily and/or without being asked (or at least without noticing it isn't being taken care of)? Keep asking yourself this. I am a person who needs near-constant reminders. The most profound reminders have been the simple moments when my parents are still my parents: mom sitting up all night looking after me when I recently had food poisoning; dad meeting me in town when I had car trouble; mom helping me methodically check for ticks when I freaked out after an outdoor fall last summer; dad jumping on the phone to save me from a really mean customer service rep; mom singlehandedly planning a party for 300 people without breaking a sweat; both of them helping me when my cat had a serious injury. The list is miles long. My point is: I may be their caregiver, their homemaker, and their advocate. But they are my parents, and always will be. Acting otherwise, or pushing them away, is nothing less than insulting and indignant. (Even when caring for those with mental incapacities, the primary goal should be the same: the preservation of their inherent dignity). 2. Relatedly: “let” your person maintain their space. Their territory. As much as you can, avoid the natural tendency to become the “alpha” on their “turf.” Since my mom’s diagnosis, and the subsequent aggravation of my dad’s chronic health issues, I have been helping them maintain their home. It is firmly their home, indubitably. I am 32 years old and have an apartment with my husband, even though I may only see that apartment a couple times a month. I’m a big girl (in more ways than one!). But here I am, telling my folks where the laundry and dishes and trash bags “should” go in their own house. Ugh, somebody stop me! WHY do we do that? I know I live here a majority of the time, but it is NOT my “turf.” I am here to serve, not to have the circumstances serve ME. A dear friend once said to me that it’s hard to be told how to do a chore when the person telling you what to do is not physically able to do the chore. I agree; nobody likes to be micromanaged. But, frankly, we need to get over ourselves. Seriously. There is no world in which it is okay for me to be telling my mother where her plates should be stacked, even if I’m the one stacking them instead of her. I may spend most of my nights in my parents’ house, but I am not the boss. This is an ongoing internal struggle for me, trust me. In many many many ways, part of signing on to be a caregiver has got to be the assumption of humility in order to willingly help your person run his or her life on HIS OR HER terms. That should be our motto. We are helpers, we are advisers, we are advocates, we are cheerleaders, we are housekeepers, but we are NOT captains. We can be captains when the actual captain wants us to take the helm, but we can’t take the helm ourselves. That, my friends, is mutiny. 3. Your relationship with someone is NOT automatically the same as your loved one’s relationship with that person. When dealing with business on your loved one's behalf, you must act in accordance with your loved one's relationship preferences and NOT your own. This one is tricky; let me explain via example. a. My husband and my mom are both turf-sensitive people (see above). They both crave their “lone wolf” time, as I call it. Meanwhile, my dad and I are usually up for whatever adventure brings everyone together, even in the same room. This leads to drastically different preferences existing under one roof. Even though my caregiving responsibilities tend to mean I stay 80% of my time with my parents, that doesn’t mean I get to live my life out of their house. My husband and friends are always welcome, of course; in fact, my parents have extremely graciously made it clear that they are family and do not need “permission” to be around. However: that does not give me carte blanche to dictate who is in my parents’ territory at any given time. The burden is appropriately on me to limit interactions that are solely for my benefit, so that my parents' privacy and time are respected within their own walls without them needing to defend their own preferences. b. I may not want to have lunch dates with the same folks that my parents do, and vice versa, but because we are all in this together and are usually chauffeuring and assisting each other when running errands, we all go to the same lunch dates, and we enjoy them for the team. c. Over the course of the years of mom’s treatments (and dad’s too, for that matter), we have all forged various friendships with the members of the medical team. However, my friendships with my parents’ HCPs are not the same as my parents’ own friendships with their HCPs, and that is okay! You may be confused when your loved one has a different reaction to a certain person on the medical team than you do, and it may feel super important to analyze that different response because, after all, the stakes are high. These relationships are crucial to your person’s well-being, so there is immense pressure to get them “right.” But, consider: the members of the medical team are human, just like us. They have friends and acquaintances of different degrees, just like us. So long as your person is feeling heard, cared for, listened to, and taken seriously by his/her medical team, you shouldn’t feel obligated to also be any HCP's best friend! Conversely, if you feel you are the one who has bonded in a friendly way with your person’s medical team members, and your person’s treatment has not been affected by this, encourage your person to let go of any self-imposed pressure to feel the same way you do! 4. Your priorities are not your person’s priorities, and vice versa. Try your best to let this create compromise, not chaos. Hoo buddy, do I struggle with this. One example comes screaming to mind: I am not a neat person. I somewhat thrive in clutter and asymmetry. My mom, on the other hand, is the most meticulous decorator/organizer/arranger you have ever met. She’s amazing: if you need to streamline your space, she’s your gal. The storage room in her home looks like a department store warehouse. She is not a fuddy-duddy, and I am not a slob; we are both fun and funny people. We are not like the Odd Couple; rather, we are more like a before-and-after photo shoot of a Kon-Mari project. Unfortunately, this means that clutter is a source of stress for her; concurrently, organization projects are a source of stress for me. Why? Essentially, because we have totally different priorities with how to spend our time. She would much rather we tackle the backlog of homemaking tasks that have been put on the back-burner since her diagnosis; whereas I would rather focus on just about any other shorter-term task (a dear friend of mine will read this and suggest I mean laundry, and she isn’t wrong!). Essentially, mama and I have different aesthetics. The environment that calms her requires work that stresses me, and the work that invigorates her creates a hierarchy of tasks that I do not prefer. So, where do we go from here? I think the best we can do is tackle both to-do lists the same way we’d tackle any to-do list: gradually, in chunks. Baby steps. The key? Remembering that priorities matter because the PERSON matters. Their life, their terms. Your life, your terms. Even when they are at odds. If you can’t do “one or the other,” then you must do BOTH. Compromise. Not chaos. 5. Your experience with lung cancer is not the same as your person’s experience with lung cancer. I need this one taped to the bathroom mirror. They are intertwined; they are both important and valid; they are both necessary for purposes of personal growth and understanding and coping and advocacy. BUT: THEY ARE NOT THE SAME STORY, and should not be treated as such. You will not answer questions about lung cancer the same way that your person will answer questions about lung cancer, and vice versa. AND: one story is not wrong. They are BOTH TRUE, at every moment in time. The patient is not always right because he or she is the patient; the caregiver is not always right because he or she is the caregiver. The primacy of each party over his or her own life is the only primacy; everything else must be negotiated. Other than that primacy, there is no hierarchy, because everyone involved in the situation matters equally. I know that sounds odd, since we often feel that much of our caregiving experience involves sacrifice, but consider: you made the choice to assist your person. None of us chose lung cancer, but we chose our response to the situation. You chose to marry your spouse; you chose to come home when your parent was diagnosed; etc. In some way, shape, or form, you chose to join the team, whether before or after diagnosis, because you LOVE the person with the diagnosis. Acting on our love for another person is always a choice. While caregiving may be a dramatic version of that choice, it is still a manifestation of the same motivation: we love the person, so we act like it. Do not confuse the involuntary nature of the diagnosis with the voluntary nature of our response to the diagnosis. So: no one member of the relationship is more important than the other, even though we make decisions to sacrifice certain personal comforts or preferences when one member of the relationship is in greater need than the other. We are a team. Perhaps, at the end of the day, that’s all we need: to remember that we are on a team and that the cancer is the opponent. Our person is still someone we love and who loves us, so we can all take our power back by focusing on keeping our foundational relationships strong and not allowing the circumstances to confuse our motivations. Love got us into these relationships in the first place; love led to our decisions; and love can carry us through the dark moments.
  3. “You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!” If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or— wait for it— when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient. There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme. And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being. If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once. But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool. At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?” And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and… She wasn’t! She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!” And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play. Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic. My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised. Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10. And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well. (If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask). The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script: Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.” Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?” BOOM. Done. Weapon deployed. (The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question). Anyway: my favorite part of using the pivot tool? You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all. And, at the end of the day, they might actually come through.
  4. Happy Monday, my friends! (Yeah, I know, it’s weird, I said “Happy” Monday…it’s not necessarily an oxymoron…hear me out!) I was always the kid who enjoyed the first day of school. How about you? The first day of vacation was pretty great, too! There is great power in “firsts.” We are almost supernaturally (or superstitiously!) drawn to the gravitas of beginnings. I remember very clearly making a circle of hands around my mother when she began her first treatment: my dad, some close friends, the nurses at the infusion center. Some of us prayed, some of us stood silent, some of us spoke whispered encouragement. I’ve heard similar memories from many patients and caregivers. No matter the words on our lips or in our minds, the sentiment is the same: there is great awe when we begin an experience, a journey, a season. I’ve always thought that part of the particular joy unique to a beginning is the ability to cast off any detritus from the previous experience, journey, or season. If there is baggage or fear or angst (or anything else unpleasant) that is keeping us from advancing into the new moment, the changing chapter gives us permission to leave behind whatever we do not need—whatever will not service us as we move forward. In that way, a beginning is also a chance to reset. A couple of careers ago, I was a professional actor. I still do the occasional play, when the schedule is calm, and I recently closed a show with my small community theatre group. During rehearsals, when there is a problem in a scene, or a snag in a set change, there is always one perfect solution: we reset. “Reset” is shoptalk for going back to zero: we literally re-set the scene (actors AND scenery), start the scene over, fix the issue, and then move on with renewed confidence. Like a bone that breaks and heals stronger at the point of fracture, a scene that has been reset usually turns out much better and smoother than it was before. So, I’ve been thinking lately about the significance of beginnings and resets. That brings me back to Mondays… Mondays are the calendar’s “firsts.” For many of us, it’s the first workday after a (too-short) break. For others, it’s the first schoolday of the week. For most of us, it’s the first day we can expect business-hours productivity after the hectic rush that is (usually) Friday afternoon. And, for all of us, it’s the loop-point of the week. It’s the marker of how we count weeks backward or forward, between commitments and appointments. So, it’s a built-in reset. It’s a page-turner. It’s a blank slate. It’s a chance to start over: whatever didn’t get finished on Friday didn’t destroy us, and whatever has to get finished this week hasn’t yet come due. For those reasons, I love Mondays. They’ve become my mini-reset. From Sunday night into Monday morning (I’m an incurable night owl; I’m too old now to deny it!), I find poignant peace in the tiny resets I can enact around the house. I help Monday arrive with its blank slate by creating all the blank slates I can think of: leveling off the laundry pile, clearing the kitchen counter, emptying the sink, running the dishwasher, taking out the trash, refilling toilet paper rolls, cleaning cat boxes, loading drink cans into the fridge… You get the picture. I cannot emphasize enough how precious that time has become to me in the years I’ve been helping my parents. I now look forward to Sunday evening, which, in itself, is life-changing. Instead of fearing Monday morning’s potential onslaught of “stuff” to deal with, I try and push last week’s dirt into the bin (or under the rug, ha!) and set the stage for the week on my own terms. I don’t know why waking up to a sink full of Friday’s dishes on Monday morning is so soul-crushing (knowing the "why" is above my pay-grade), but it IS. It just is. At some point along the way, I learned this: I learned that the sink full of dishes represented everything that did not get “checked off” last week, and that it now stood between me and everything I needed to accomplish THIS week. This was one of the most satisfying epiphanies I ever had, my friends, because the problem was so easy to fix. We can’t change our circumstances, and that alone is the source of most of our stress as caregivers. There is so much about our current situations that we would change if we had the chance, but since we can’t, we need to channel that desire for control into the mountains we CAN climb. And that laundry pile over there is just the right mountain.
  5. Sometimes, HOPE is a kitten. Okay, okay, sure, I know, that sounds a little weird. And a little bit like a desperate attempt to pass a poetry exam. Let me explain… Hope is strong and confident. Hope can be fickle. Hope can be hard to corral, name, and predict. Hope can be ephemeral, and hope is also everlasting. Hope can be full of contradictions. Hope can take many forms, directions, shapes, and sizes. You’ve heard the expression “herding cats?” Hope is one thing that cannot be herded. It is inspired, it cannot be forced, and it is felt differently by different people. And hope, like most emotions we encounter after lung cancer has entered our lives, can have a complicated duality. An ambivalence. A way of being prickly when it doesn’t fit in our hearts, and a way of busting our hearts wide open. A way of showing up without telling us why it’s there, and staying with us, warm and fuzzy and comfortable and soft, exactly when we need it most. And that duality and ambivalence is essential to its nature. It isn’t going away. …Okay. You get it. Hope is like a kitten. I’ve gotten just about everything I can from that analogy! But, that’s not entirely what I mean. Let me explain (some more). Let me show my hand. By way of update: My mom is one of the people for whom I am a “caregiver.” She has been living with Stage IV NSCLC for a little over three years now. She was on a clinical trial of an immunotherapy medication for just over two years. She’s coming up on a year of having not been on any active treatment. She left the trial by choice, after experiencing some vague side effects that were determined to be likely due to the treatment (more on that another time). She is exhausted every moment of every day, to some extent. This woman who was always the most productive, vital, “type-A,” energetic soul I had ever met is now essentially housebound. Her profound lack of vim and vigor is the antithesis of her identity, and it has left her feeling robbed. Some days she feels like going out to lunch or running one errand; but there are usually weeks between these good days. (Side note: we have long made her medical team aware of her severe fatigue, and it was determined to likely be a result of her treatment. Because every patient and every situation is different, please always make your loved one’s medical team aware of every side effect that is experienced, especially when these interfere with your person’s quality of life!) So, with these long hard days of being stuck at home, not feeling like herself, one might imagine that she would feel glum, and downtrodden, and defeated. The answer is: of course she does! She’s human! (Trick question, with a trick answer…) See, the thing is, that isn’t ALL she feels. Nope. Lately, despite choosing to not be on treatment, and despite being overwhelmed in the way that only a very tired person who has gone through a lot can feel (I know you all understand), she has also felt…hopeful. Which reminds me: She woke up a couple days ago wanting kittens. You heard me. KITTENS. She wanted kittens in the house. Kittens. Baby cats. Catlings. Cat blossoms. Cat kids. Cat puppies. We currently have two grown cats. We worship the ground they walk on. We have had both cats and dogs in the past. Pet adoption is an important cause to us, and we tend to make a new addition to the family every 5-8 years. Following our normal timeline, we have talked about adopting kittens a few times since mom’s diagnosis in 2015. But, 10x/10, she has decided against the idea, once even as I was literally walking out the door to head to the shelter. She has been on a scale somewhere between hesitant and heartbroken each time, and each time because she did not feel she could handle the joy that a new pet brings. Let me repeat that: she felt she could not handle, or did not want to welcome, the particular joy that a new pet brings. The joy of a new pet is like Spring: It’s promise. It’s a belief in a tomorrow. It’s hope. Disclaimer, because I feel I have to make one: the decision to adopt a pet is a serious one, and should not be made lightly. We are very experienced cat owners, and we have gone through the cat-to-kitten introduction process many times over the years. In a caregiving situation, pet care should be particularly deliberately and honestly discussed, since caregivers may or may not have the ability or desire to assume those responsibilities. But, in our case, that situation could not be more perfect. I mostly live with my folks as part of my effort to help out, so I am around (and, let’s face it, more than willing) to contribute my part to Project KittenHope. At the end of the day, the kittens will become part of the whole family, owned and loved by all of us. When my mom declared that the haze had lifted and that she was ready to take this step, it was an automatic victory. It was a sign. It was hope. Thus: this week, into our lives walked a two-month old little girl cat and a two-month old little boy cat. And, yet, those of you who are here reading this understand, not needing any disclaimer. Because -----------------------------------------------------------------------------------------------*- …one of the kittens just typed that. As I was saying: because you understand this daily tug of war, seeking and understanding hope. So, the past few days, while welcoming our new additions, I have literally been herding cats…and herding hope. It appears where it will, often when least expected, and gives its gift of easy breathing and lifted hearts. Just like the kittens. This past weekend, LUNGevity hosted their National HOPE Summit in Washington, D.C.: an annual gathering of lung cancer survivors and co-survivors (caregivers!) that is regularly the largest such meeting in the country. It is part family reunion, part medical conference, and part survivorship bootcamp: fellowship with folks who understand what the lung cancer experience feels like; experts who inform the crowd on the most cutting edge treatment and diagnostic research; and tips and tricks for living one’s best life as a lung cancer survivor or caregiver. The event leaves everyone enlightened, invigorated, and aware of information and tactics that can introduce HOPE where there may have been none. Thanks to the LUNGevity Foundation, May is officially National Lung Cancer Hope Month. We HOPE (see what I did there?) that you will join us every day this month in ongoing conversations about all the HOPE that is out there in the lung cancer field: new diagnostic tests, new medications, new genetic sequencing, new surgeries, new forms of radiotherapy, new places to turn for assistance, new clinical trials, new emphases on patient navigation, and more. (See LUNGevity.org for more of this. Seriously, it seems there is breaking news every day!) We also HOPE that you will share with us those moments, long and brief and in-between, that give YOU hope, inspiration, and a reminder of why we wake up every day to advocate for patients: for new treatments, for access to help, for better resources, for more information, and—as LUNGevity says--for a world where nobody dies of lung cancer.
  6. Hello, my dear friends! I. Have. Missed. You! It is so tempting, in my relationship with caregiving, to take on blame. Blame myself for this or that. Plans didn’t go off accordingly? It’s my fault. Time got away from me without my control? Oh, that’s my fault, too. Sign me up! Since my last post, our “best laid plans” were thrown out the window. Forcefully. To be totally real with you, my friends, I had wanted so badly to post about ALL THE HOPE in May. I wanted to fill your inboxes with notifications that there was a new post here every day. I wanted to fill your “Caregiver Quiver” (ooooh, I like that, I’m gonna use that!) with so many HOPE arrows that you would have a weapon to combat every moment of hopelessness. After all, May was Lung Cancer Hope Month (thanks to LUNGevity!). That’s huge. For a diagnosis that used to be like a flipped hourglass, any dose of HOPE can make the difference between having or losing the will to fight. We who spend every day in the LC community know there is SO MUCH HOPE, and yet Society At Large still sees the hourglass. So: I had wanted so badly to fill your May with links and resources and information on the newest and best stories and breakthroughs and answers. That was my “best laid plan.” But then, my dad ended up in the hospital for the entire month of May. My mom is my LC patient, but my dad has his own chronic health issues that require frequent hospital stays. You know the darndest thing about hospital stays? They aren’t always marked out in my day-planner! Shoot. Go figure! So. There went May. And I have been tossing and turning and being grumpy and angsty about letting you guys down. I went and pulled the tweets from our last #LCCaregiver twitter chat, when we talked about HOPE and how we could spread hope and share hope and how we as caregivers could encourage our loved ones to have ALL THE HOPE. I was in a real funk, guys. I really felt like I had lost the chance to really make Lung Cancer Hope Month “count.” Then, it hit me… Do you remember what we talked about in that chat? Because I do, and I will NEVER, ever forget it. We talked about HOPE, and sources of hope, and we said: this community is our source of hope. This group of souls going through the same thing is our source of hope. We feel hopeful by being there for each other, thick and thin. And my angsty funk? My trying to stick to plans? That was all making me feel hopeLESS. I was acting and talking like a person who felt hopeLESS. No more. I reject that trap. You are my family, and I am yours. I don’t need deadlines and set schedules to be there for you, and you don’t need that to be there for me! The most relieved I have felt along this entire walk with lung cancer have been the times when I let go of trying to keep to an ironclad schedule, and have instead followed my gut and allowed myself to really be present in the current moment and what the moment needed. I want to be present for you, and I know you are present for me. We are all in this together. Now, don’t get me wrong: I DO want to catch up and write some posts about ASCO (the major oncology conference that just took place in Chicago); about recent drug approvals; about ways caregivers can find peace. And I will. But I also know I won’t be letting you down. Let’s chat! TONIGHT (Wednesday) at 8pm ET, let’s chat about the support network you keep around you. Let’s talk about what you need, where you feel most confident and least confident, and what you can do to help your support system help YOU. This is an ongoing conversation, believe me; let’s all grab our tea and put on our slippers and come together to follow #LCCaregiver tonight. Questions are below. I hope to “see” you there! Bring a friend; all are welcome. Love always, Danielle #LCCaregiver Twitter chat, tonight (Wednesday) at 8:00PM ET. Follow #LCCaregiver on Twitter to participate! T1: Who do you consider your “support system?” T2: What are the strengths in your support system? T3: What are the gaps or weaknesses in your support system? T4: What has been the hardest thing to ask someone? What kind of help is hard to find? T5: Would you rather people ask what you need, or just volunteer specific help? T6: What resources or tools would you like to have in your Caregiver Quiver? (sorry, can’t help it, I really love that phrase now) (If you’ve never used the LUNGevity Navigator App, just wait: I’ll tell you about it tonight!) T7: Are there local resources for caregivers where you live? What local resources would be cool to create? T8: What can the nonprofit orgs like LUNGevity do for you? (have you checked out LUNGevity’s awesome caregiver resource center?!) T9: What can your fellow caregivers best do to support you from afar?
  7. Hello, my friends! I HOPE, wherever you are, that you are having a beautiful Spring! I HOPE, whatever you are up against, that you are finding support and peace in your endeavors. I HOPE, however you need, that you are finding the time to create room for yourself in your busy schedule. I HOPE, above all, that you and yours are doing well. Thanks to #LUNGevity, May is officially “Lung Cancer HOPE Month.” This particular awareness campaign places a much-needed focus on all there is to be HOPEful about in the #lungcancer world. To that end, we will be talking frequently this month about what HOPE looks like; what it feels like; what it means to you and to your loved ones involved in this lung cancer experience. Also: I had the extreme honor of attending LUNGevity’s national HOPE Summit this past weekend. For the first time, the Summit featured a separate day of sessions designed for Caregivers: the “COPE” Summit. My suitcase is still in the hall; I am still sore, sleepy, and overwhelmed: in the MOST productive and phenomenal way possible! If you have not yet attended a regional or national HOPE Summit, I could not possibly recommend it more wholeheartedly. The experience is hard to explain, other than saying it is a near-necessity for anyone touched by lung cancer: there is nothing more uplifting than being surrounded by fellow survivors, Caregivers, experts, and researchers who are ALL working through the same difficulties to reach the same goals. The sense of community is intoxicating, and the sense of forward progress in policy and knowledge is inspiring. It is part conference, part congregation, part school, part party, part reunion, part group therapy, and ALL heart. Thank-you, LUNGevity!!! I had briefly considered writing a novel-length post that would recap all of the Caregiver-specific takeaways from the weekend, but then I realized that that would be unfair: unfair to you, my friend, having to read all of that at once, and unfair to the extent of the material itself. I have plenty of talking points from the conference to share with you, all about HOPE, and since this is HOPE month…you see where I am going with this… Stay! Tuned! Let’s start conversations! Let’s put our heads together and be honest and be open and reach out. I would be honored to hear from you! To kick off this month-long conversation, our regular monthly #LCCaregiver Twitter chat will be tonight (Wednesday, 5/3) at 8pmET. You know the drill: follow the hashtag #LCCaregiver to participate. (I highly recommend using a chatroom service such as tchat.io as well. Just put tchat.io in your address bar, and enter #LCCaregiver when it asks for a hashtag). If you are not on Twitter, please join! The lung cancer support community on Twitter is large, active, and incredibly helpful. There is no need to face any of this alone! The message boards and blogs here on LCSC are profoundly comforting, and the Twitter presence of fellow advocates is a meaningful complement. For tonight’s chat, we’ll be focusing on breaking down a large question: what is the role of Caregivers in spreading and advocating for HOPE in lung cancer? One major thought I’ve had since the HOPE Summit—one major takeaway I will explain in more depth later—is that HOPE can be complicated. It can be especially complicated when the Caregiver is taking the natural backup role: we are not the patient. What are our boundaries? When should we captain the HOPE ship? When should we yield? Is it a different skill to help our loved ones be HOPEful than it is to help spread HOPE in the wider community? Think on that. The specific topics I’ll be asking about tonight are listed below. I can’t wait to “see” you tonight! Bring your popcorn and a friend (or two)! Love and thanks, Danielle Topics for #LCCaregiver Twitter Chat 5/3 What does HOPE look like to you? What brings you HOPE? What does HOPE look like in the broader cancer community? What have you done to bring HOPE to your loved one? What can we, as Caregivers, do to bring HOPE to our loved one? Is there something that we, as Caregivers, can do to bring HOPE to our loved ones with cancer? What specific actions can Caregivers take to support Lung Cancer HOPE Month? What actions are appropriate for us to take as Caregivers to promote HOPE? What do we do if we have different ideas about #HOPE than our loved ones?
  8. "Boy, what a week!" ...How many of you know that phrase by heart? All of you! (And not always starting with such an innocent word as "boy...") Well, that's been my week. And I know it probably has been for you, too. Just by way of illustration: I went to the grocery store a week ago. On the day of my mom's most recent treatment. Mom's treatment stays usually last about 6 hours, so the day is toast by the time we get home, and we are "pooped." So, back to the groceries. I. Just. Now. Finished. Unloading. The. Car. Don't get me wrong: I got the precious perishables out as soon as we went inside. But the rest? It slept in my car through a week of hot-cold-stormy-sunny. Once we had the front door locked, the outside world vanished. This week progressed similarly for the rest of our responsibilities, too: we felt under the weather (literally and figuratively), so the ticks on the tick-off list just didn't get ticked. I am absolutely sure that each of you knows that feeling. That's one of the safety nets of this community: nobody knows what it's like until they've been there. Not really. That's what helps to build our Caregiver community and our LC community. That's our familial bond. But, like most weapons, it can be a sword or a shield. Sometimes, that bond can also be a burned bridge. Have you ever been challenged by another Caregiver? Asked to defend why you chose a particular approach for your loved one? Asked why you haven't done this or tried that? I have. And I bet you have, too. It hurts. Not only does it imply that one approach is better (which is condescending), but such criticism places an additional burden on already overwhelmed shoulders: explain this to me! Justify this to me! Take the time to research my position! Even as we build our bonds as Caregivers, and even as we acknowledge the struggle that unites us, we must always remember that every family is different. Every patient has different needs, so every Caregiver must respond to THAT patient, OUR patient, rather than to some "ideal" formula of caregiving. Want a live-in aide? Hire one. Don't? Then don't. Same with choosing treatment plans, listening to holistic practitioners, which tasks to assign friends and family, which information to share with whom, how to make the calendar...anything. I'm as guilty of this as anyone, but I try to consistently remind myself: we are on the same journey, but along different paths. And that's okay. I would be honored if you would join us at our next monthly #LCCaregiver Twitter chat: tomorrow, Wednesday 4/5, at 8pm ET. Just follow #LCCaregiver to participate. Everyone is welcome. Bring a friend. Tell a fellow Caregiver. Have your loved ones chat alongside you. I am so excited to share with and learn from you. The questions and topics are below, so that you may review them before we "meet" tomorrow night. Love and thanks, Danielle ? Did you find support among other caregivers or do/did you find it more challenging? Why? Have you experienced feelings of guilt or judgement placed upon you by other #LCCaregivers? What are some of the tensions that can erupt between carers? What are the different tensions between #LCCaregivers in families vs in support groups? How can a new #LCCaregiver prevent caregiver conflict and competition? Are there any tips or resources that can help an #LCCaregiver dealing with competition and judgement?
  9. LUNGevity Foundation Partners With CancerCare to Launch Lung Cancer HELPLine Free Service Addresses Emotional, Practical, and Information Needs of Lung Cancer Patients FOR IMMEDIATE RELEASE Media Contact: Amanda Greenfield amanda.greenfield@kingcompr.com 212-561-7430 WASHINGTON, DC (January 19, 2017) – LUNGevity, the nation’s leading lung cancer-focused nonprofit organization, today announced the launch of the LUNGevity Lung Cancer HELPLine, a free phone service through which a team of professional oncology social workers will be available to address the emotional, practical, and information needs of people diagnosed with lung cancer, their families, and caregivers. This year, more than 240,000 people in the U.S. will be diagnosed with lung cancer, which means that hundreds of thousands of lung cancer patients, family members, and caregivers will be responsible for navigating a disease that is likely unfamiliar to them. The LUNGevity Lung Cancer HELPLine will serve as a vital resource and source of support for all affected by the disease. LUNGevity has partnered with CancerCare®, the leading national organization providing free, professional support services and information to help people manage the emotional, practical, and financial challenges of cancer. CancerCare’s team of professional oncology social workers are uniquely qualified to address these needs. For nearly 73 years, CancerCare has provided free support services to cancer patients aimed at alleviating distress, helping them to obtain the best possible outcomes from their treatment. Those seeking assistance can call LUNGevity’s new toll-free HELPLine, 844-360-LUNG (5864), from 9:00am – 5:00pm ET, Monday through Friday to: Receive immediate access to reliable educational resources and programs Get personalized information about lung cancer and treatment options Learn effective ways to cope with cancer including managing emotions such as depression, anxiety, or sadness Improve communication with their health care team and loved ones Get referrals to financial assistance resources for needs including pain medication, homecare, childcare, medical supplies, transportation for treatment, and copayment assistance related to chemotherapy and targeted treatment therapies. (Provided to those who meet CancerCare’s eligibility guidelines; subject to funding availability.) Depression, anxiety, strains on relationships, loss of motivation, and financial burdens are commonly experienced by lung cancer patients and can compromise a patient’s ability to complete treatment. LUNGevity developed the Lung Cancer HELPLine to help patients, their caregivers, and families combat these symptoms by offering direct and personalized support for callers across the nation. “Providing lung cancer patients, their families, and caregivers with the resources and tools they need to address every phase of this disease is a priority,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “Our goal in setting up this HELPLine is to add dimension to these efforts and provide an additional resource to individuals affected by lung cancer to ensure that no one has to navigate this disease alone.” The HELPLine will join a number of other critical resources LUNGevity has created to support the needs of lung cancer patients, their caregivers, and loved ones, including Clinical Trial Finder, LifeLine Support Partners, and the recently launched Lung Cancer Navigator Mobile App. Charitable funding for the HELPLine was generously provided by Bristol-Myers Squibb Company and Genentech. For more information on LUNGevity, please visit www.LUNGevity.org. Click here to read the full press release.
  10. I'm a three and a half year survivor of Stage 2 Adenocarcinoma. I wanted to pay forward some of the great support and advice I received from others when I was first diagnosed and wrote a book about getting diagnosed, having my left upper lung removed, going through chemotherapy, losing my hair, and all the various points along the way. I included some terminology since I had no idea how to speak cancer as well as some resources - most of which I learned about after I was done and was researching for the book. Kirkus did a review of the book, (The Cancer Card, Dealing with a Diagnosis) and says: 'Reflective, upbeat, and hopeful; offers honest insight into the real trials and tribulations of a cancer patient as well as valuable advice for those facing treatment.' Here's a link if you have an interest: https://www.amazon.com/Cancer-Card-Dealing-Diagnosis-ebook/dp/B01LX8RIK1/ref=sr_1_1?ie=UTF8&qid=1476363189&sr=8-1&keywords=the+cancer+card+karen+van+de+water Please let me know if I can be of any help at all to anyone going through - it's a lot. I want to help if I can. All my best - Karen
  11. It’s normal for someone diagnosed with cancer to experience feelings of sadness, fear, anger and grief. It’s when those feelings prevent you from functioning in your everyday life and you feel emotionally paralyzed in your situation for an extended period of time that you need to seek help. Cancer patients experience depression two times more than the general population and studies have shown that mental health and social well-being can affect the success of treatment. Those diagnosed with cancer have life plans that are interrupted, a change in physical activity and ability, role changes in relationships, and career, may experience a loss of self-image or sense of self. They also experience fears about the cancer growing within their bodies, anxiety about the success or failure of treatments, worry over their families and caregivers and may fixate on the possibility that their lives will be cut short from their disease. Those diagnosed with lung cancer have an additional set of issues facing them. Some may experience the stigma associated with the disease and experience anger or guilt, isolation or shame depending on whether or not they had a smoking history and whether or not they feel they are getting adequate medical and emotional support from their local communities. Lung cancer survivors may also feel outrage, anger and a sense of being forgotten because of lack of public awareness and support of the disease in the media, limited treatment options available for the disease and sparse funding that goes to research the disease. Depression is more than just the normal feelings of sadness. Depression is when an individual experiences at least one of the following symptoms for more than two weeks: Feeling sad most of the time Loss of pleasure and interest in activities you used to enjoy Changes in eating and sleeping habits Nervousness Slow physical and mental responses Unexplained tiredness Feeling worthless Feeling guilt for no reason Decreased concentration ability Thoughts of death or suicide Getting help for your depression can help your cancer experience feel less challenging; it may help your relationships with the people around you may give you back some sense of control over certain parts of your life. Visit the National Cancer Institute for more information on depression in cancer patients and call your doctor if you feel like you may be suffering from depression. ______________________ Did you experience depression with your lung cancer diagnosis? Share your tips on how you dealt with your depression by commenting below.
  12. Do you have questions about how a cancer diagnosis might affect you or someone you care about? Join the Cancer Legal Resource Center for a Summer 2016 Webinar Series to learn about important legal issues that stem from a cancer diagnosis in four different webinars. July 13, 2016: 5 Legal Tips for Recently Diagnosed Cancer Patients Join us for a webinar on Jul 13, 2016 at 12:00 PM PDT. Register now! Find out about the various legal issues that can stem from a cancer diagnosis, including employment law, insurance options, and disability insurance, and the laws that protect cancer patients. July 27, 2016: 5 Legal Tips for Young adult Cancer Patients Join us for a webinar on Jul 27, 2016 at 12:00 PM PDT. Register now! Learn about what types of protections are available to higher education students with cancer or students who are cancer survivors both during the application process and once the students have started college, graduate school, and beyond. Additionally, learn about ways for students or alumni with disabilities to manage or possibly discharge their student loans and applying for jobs with cancer history, etc. August 10, 2016: 5 Legal Tips for Advanced Stage Cancer Patients Join us for a webinar on Aug 10, 2016 at 12:00 PM PDT. Register now! Join us and learn about advance planning, SSI/SSDI/compassionate allowances, etc, in addition to estate planning topics such as wills and trusts. We will talk about advance healthcare directives and tools you can use to make sure that your wishes regarding medical treatment are upheld, even when you are no longer able to make decisions for yourself. August 24, 2016: 5 Tips for Caregivers of Cancer Patients Join us for a webinar on Aug 24, 2016 at 12:00 PM PDT. Register now! Find out what your rights are under the Family and Medical Leave Act (FMLA), the federal law that provides caregivers with options for taking time off work, and learn about additional protections available under state law, and about other issues involving caregivers, such as SS survivor benefits, probate, advanced healthcare directives, etc. After registering, you will receive a confirmation email containing information about joining the webinar. For questions about these webinars, please contact the CLRC at [email protected]<script data-cfhash='f9e31' type="text/javascript">/* */</script> or call (213) 736-1100. To Ensure this email does not end up in your junk mail, please add [email protected] to your address book or safe list.
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